Meeting

> Sarah and I were able to spend a good day with Lalo yesterday. We arrived to hear OT tried to feed him a bottle and he threw up before they even started, but was successful at taking 10cc the day before! Yay. We were also there for his PT session and helped keep him entertained while he worked on his exercises, including the always loved tummy time :) Little Lo also showed us his newest trick - cooing!!

> Sarah and I were there for our family meeting yesterday. The meeting was very informative regarding Lalo's condition and where he needs to be. Over all he has made great improvement considering all he has been through but is still at a point where he needs lots is support and care, which includes learning how to eat and years of PT and follow up.

> The main thing they are concerned with right now is his throwing up and lack of good weight gain. Lalo has made it to 33 cc of continuous feeds an hour and they have just begun to fortify his milk with extra calories. They will do another upper GI test to try and pinpoint the pylorus or reflux as the issue. A previous test said no reflux, but since we are still experiencing lots of puking they want to try and rule it out. If reflux is not the issue they will suggest surgery to open that muscle and put in a gtube at the same time to get him home. If it is still not clear whether that is the issue we will wait and give more time to let the situation resolve itself before we opt for a gtube placement, most likely transferring to a subacute care hospital in the upcoming weeks. In the meantime, we are going to start challenging his stomach more by transitioning him to bolus feeds (large one time feeds) versus continuos feeds. JHH will start to bottle feed him three times a day, up from only once that was only started this week and give him a few weeks to try to learn to eat on his own before we decide to do a gtube surgery. Lalo will also have a swallow study done to figure out if he it is safe for him to be eating orally (if he can protect his airway, and if he can suck/swallow/breathe at the same time).

> The narcotic weaning schedule puts us at Jan 20th to be finished with narcotics. Regardless of the plans for his weight gain/eating we have decided that at this point we are not yet comfortable to do this weaning at home, but will continue to reevaluate as we progress further.
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> So for now, our plan is to keep Lalo in the hospital at the very least for a few more weeks. He will have all the tests above and then some to help us form our long term plans. We are getting closer and both of us feel really happy after this meeting. Thank you for all your thoughts and prayers.
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> Lalo